Effective Date: September 1, 2023

Privacy Policy Terms

Dysautonomia Support Network (hereinafter referred to as “DSN”) operates the www.dysautonomiasupport.org website (hereinafter referred to as the “Service”).

Your privacy is important to us. This webpage informs you of our policies regarding the collection, us, and disclosure of personal data when you use our Service and the choices you have associated with that data.

We use your data to provide and improve the Service. By using the Service, you agree to this Privacy Policy. 

We Respect Your Confidentiality

Your personal information will be held in strict confidence. We use your information only for its intended business purpose. We do not sell or trade your information to other organizations or individuals.

We Protect Your Information

If you choose to send us an email, we may retain the contents of your email message, our reply, and your email address as part of our ongoing customer service efforts. We reserve the right to contact you after you have contacted us and may send future email and/or surveys to you about DSN. You may notify us via email if you wish to discontinue electronic communication.

We Keep Accurate Records

We keep your personal information as accurate, complete, and up to date as is required to fulfill the purpose(s) for which you provided us with your personal information. Upon written request we will remove your personal information from our primary databases, where possible and excepting where legislation or regulation requires our retention of it (for example, charitable giving history tied to income tax receipts, and backups.) You may request a copy of your information, request to delete your information, or request to remove yourself from our databases by communicating with us via the contact information listed at the end of this policy.  You may also request to correct, update, or change your personal information at any time by communicating with us via the same contact information. 


Service: Service is the DSN website operated by DSN

Personal Data: Personal Data means data about a living individual who can be identified from that data (or from that data and other information either in our possession or likely to come into our possession.)  Personal data includes any personally identifiable information that can be used to contact or identify you.

Usage Data: Usage Data is data collected automatically either generated by the use of the Service or from the Service infrastructure itself (for example, the duration of a page visit).

Cookies: Cookies are small files stored on your device (computer, tablet, or mobile phone).

Information Collection and Use

We collect several different types of information for various purposes to provide and improve our Service to you.

Personal Data

While using our Service, we may ask you to provide us with certain Personal Data. Personal Data may include but is not limited to:

  • Email address
  • First and last name
  • Phone number
  • Address, State, Province, ZIP/Postal code, City
  • Cookies

The amount of information you provide is completely voluntary; however, providing less information might limit your access to all of the Service’s features.

Usage Data

We may also collect information on how the Service is accessed and used (“Usage Data”). This Usage Data may include information such as your computer’s Internet Service Provider; Internet Protocol address (i.e.,. IP address); browser type and version; operating system; the pages of our Service that you visit; the time, duration, and date of your visit; unique device identifiers; diagnostic and crash logs; and other data relating to Service usage.

DSN collects usage data in order to assess how users access and utilize the site. This data is valuable to the company for various internal purposes, including troubleshooting and improving the site's functionality.

Tracking and Cookies Data

We use cookies and similar technologies to enable services and functionality on our site and to understand your interaction with our service. By continuing to use our site, you agree to our use of such technologies for marketing and analytics.

Cookies are files with a small amount of data which may include an anonymous unique identifier. Cookies are sent to your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our Service.

Examples of cookies we use:

  • Session Cookies: We use Session Cookies to operate our Service.
  • Preference Cookies: We use Preference Cookies to remember your preferences and various settings.
  • Security Cookies: We use Security Cookies for security purposes.

On the website, you can enable and disable several cookies:

Essential Cookies

These cookies enable core functionality such as security, verification of identity and network management. These cookies can’t be disabled.

Enable Marketing Cookies

These cookies are used to track advertising effectiveness to provide a more relevant service and deliver better ads to suit your interests.

Enable Functional Cookies

These cookies collect data to remember choices users make to improve and give a more personalised experience.

Enable Analytics Cookies

These cookies help us to understand how visitors interact with our website, discover errors and provide a better overall analytics.

Use of Data

DSN uses the collected data for various purposes including but not limited to:

  • Provide and maintain the Services
  • Notify you about changes to our Service
  • Allow you to participate in interactive features of our Service when you choose to do so
  • Provide customer care and support
  • Provide analysis or valuable information so that we can improve the Service
  • Monitor the usage of the Service
  • Detect, prevent and address technical issues

Transfer of Data

Your information, including Personal Data, may be transferred to, and maintained on, computers located outside of your state, province, county or other governmental jurisdiction where the data protection laws may differ from those from your jurisdiction.

If you are located outside the United States and choose to provide the information to us, please note that we transfer the data, including Personal Data, to the United states and process it there.

You consent to this Privacy Policy followed by your submission of such information represents your agreement to the transfer of that information.

DSN will treat your data securely and in accordance with this Privacy Policy. No transfer of your Personal Data will take place to an organization or a country unless there are adequate controls in place equal or better to those laid out in this policy, including the security of your data and other personal information.

Legal Requirements

DSN may disclose your Personal Data in the good faith belief that such action is necessary to:

  • Comply with a legal obligation
  • Protect and defend the rights or property of DSN
  • Prevent or investigate possible wrongdoing in connection with these Service
  • Protect the personal safety of users of the Service or the public
  • Protect against legal liability

Security of Data

The security of your data is important to us but remember that no method of transmission over the Internet or method of electronic storage is 100% secure. While we strive to use commercially acceptable means to protect your Personal Data, we cannot guarantee absolute security.  

DSN cannot guarantee that user data will be immune from malicious attack or compromise and, as such, users should understand that their transmission of personal data is always at their own risk.

Users should carefully protect the personal information that they submit on the site including your passwords, usernames, location, images, and videos so that third parties can't manipulate their accounts or assume their identities. Please do not disclose any sensitive information to DSN.

Data Breach

In the event ,a breach, DSN will work diligently to gather related information, conduct a thorough investigation, inform any relevant necessary regulators, inform impacted individuals of the breach, identify what personal data has been impacted, how personal data was impacted, and draft a comprehensive containment plan to the extent possible with the limited resources of a small non-profit organization.

Service Providers

We may employ third party companies and individuals to facilitate our Service (“Service Providers”), to provide the Service on our behalf, to perform Service-related services or to assist us in analyzing how our Service is used.

These third parties have access to your Personal Data only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.

DSN might need to use personal user data in connection with website maintenance, upgrades, new releases, or analytics data review or compilation. DSN may be required to share user data with any third-party service providers that it might engage to assist in these efforts.  DSN might have to share user information in connection with third-party marketing or advertising services. However, DSN is responsible for ensuring that these Service Providers employ adequate security measures with respect to user data.


We may use third-party Service Providers to monitor and analyze the use of our Service such as:

  • Google Analytics
  • Piwik/Matomo
  • Clicky

Links to Other Sites

Our Service may contain links to other sites that are not operated by us. 

General Announcements

DSN may use personal information for periodic general announcements to users. These can include notifications, updates regarding the company or the Service, marketing communications, and so forth.

Changes To This Privacy Policy

We may update our Privacy Policy from time to time. We will notify you of any changes by posting the new Privacy Policy on this page.  Users who continue to interact with the Service following a revision of this policy will automatically be subject to the new terms.

Contact Us

If you have any questions about this Privacy Policy, please contact us.

By Email: 


By Mail: 

Dysautonomia Support Network, 140 Pitman Street Unit 106, Providence, RI 02906

Thanks to J. Gerard Legagneur, Esq. and Nolo.com for their help with this policy

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